Caregiving Chat With Amy Goyer

If you missed the live online event hosted by Amy Goyer, AARP Caregiving blogger and primary caregiver for her parents, you can find answers in this chat transcript to questions about caring for a loved one, managing the emotions of caregiving, how to find respite care and more.

Comment from Joan: Sometimes I just feel like I can't do it anymore. I get so discouraged about how my Dad is doing — it's two steps forward and one step back. How can I keep my spirits up?

Amy Goyer: I can empathize! Seems like just when I take care of one health issue for my parents, another one creeps up. It's so hard to see their health and cognitive abilities decline. The one thing you have control over is your attitude. Here's my post on keeping a positive can-do attitude. Focusing on what your Dad CAN do, and not going down the spiral of what he can no longer do, can help you feel better and will also affect how you interact with him. Every time you notice a change, think about what he can still do and put energy into being grateful for that. You can do it!

Comment from Bob: How much can I expect to pay a person to "fill in for me" for a few hours? I care for my wife 24/7 (Alzheimer's).

Amy Goyer: Bob, getting back-up care while you take a break is essential for caregiver survival. Glad you are planning for that! The cost can vary greatly — from as low as $10 per hour to as high as $75 per hour depending on the needs of your loved one and the training, credentials and skills of the professional caregiver.

Some states have respite programs that provide lower cost support — some even provide vouchers to pay family and friends to provide respite. Sometimes volunteers are available to provide short respite breaks as well. Here is an article about finding respite care.

Since your wife has Alzheimer's, I'd suggest you contact your local Alzheimer's Association chapter or your local Area Agency on Aging. Ask about respite programs, fees and volunteer-based options.

Good luck and DO give yourself a break. You can't care for a loved one if you are depleted mentally and physically. Even short breaks can restore your energy. Once you do get a respite break — here are my tips for making the positive effects last longer!

Comment from SusanB: I think simple things like a walk outdoors can help with one's spirits. It obviously doesn't change the situation but it can provide some distance and air to breathe a little easier.

Amy Goyer: Absolutely, SusanB! It's about changing your focus and taking a minute to recharge.

Comment from Pat: Do you have any practical suggestions for supporting a caregiver from far away? My best friend is caring for her two parents but I can't go there because of my family schedule. We talk on the phone but I wish I could do more!

Amy Goyer: Pat, know that you are already doing a great thing for your friend by talking on the phone! Caregivers need someone to listen — and sometimes it's only a 5-minute conversation but the fact that she has you there when she needs to call is worth millions! Other things you might do are:

Send cards and letters regularly — getting good mail is a surprise these days and can really lift the mood!

Send her a gift certificate for getting her nails done, or a massage.

Send flowers, and in general just keep reinforcing what she is doing and that you think she is amazing — we all need some validation!

Comment from Rosemary: Amy, so glad you're doing this live chat! Can you give me the pros and cons of taking care of your parents at home? My mother is in an excellent assisted living home but she has deteriorated physically and mentally over the past summer. I'm spending so much time going over and overseeing her care that I figure I might as well take care of her at home. And the facility has just upped their monthly fees. Nearly $100,000 per year! At this rate, Mom will run out of money and I'm not sure that they will keep her, although she's been on the continuing care campus for 15 years.

Amy Goyer: Rosemary, every situation is unique, so assisted living might be the perfect option for some people and not so much for others. On one hand, when our loved ones are living in a protected environment it can be a stress reducer for us as caregivers. We may not feel like we have to be with them all the time and can rely on others for some of their care. They may get socialization and activities there and not be so isolated — and they may maintain a level of independence that is positive for them.

On the other hand, managing their care, making sure what's promised is actually being done and constantly going back and forth to see and care for them can be very stressful and exhausting. Add the costs in, and some caregivers do decide caring for loved ones in the same home is more effective, less costly and less stressful.

I can share with you my personal situation. I can honestly say that since I moved my parents in with me five months ago, I actually think my stress levels are down some. The financial worries were huge when they were in the senior living community. And coordinating their paid care, not being there to oversee the professional caregivers and driving back and forth was mentally and physically exhausting for me. For months I was even spending every night at their place. I also didn't get as much quality time with them as I'd like. Now that we live together we can afford a wonderful professional live-in caregiver, Danielle, to help me. I can spend downtime with my parents in between doing my own housework and finances, etc. I know how they eat, sleep and take their medicines because I either do it or Danielle does. I know their living environment is clean because I do it or oversee it! I am not constantly in the car. We are all happier and more rested. It feels like natural family living and I like that.

Yes there are downsides too — loss of privacy, some sleepless nights, less control over my home atmosphere — but for me it's worth it. Again — every situation is unique though — it's not for everyone. Find great information on choosing housing options in our AARP Caregiving Resource Center. Keep me posted on what you decide, Rosemary!

Comment from Rebekah: How do you handle the guilty feeling of wanting a minute to yourself?

Amy Goyer: Guilt is one of the most common emotions for caregivers ... I certainly have felt it too. There are times when you long for a change — but realize that change would mean not so great things for those you are caring for ... I get it. Here's the key when it comes to guilt: You have to keep on reminding yourself that you are doing the BEST that you can do. You have to accept the fact that you cannot give to others if you, yourself, are empty.

Remember on the airplane when they tell you to put the oxygen mask on yourself before you help a child or someone sitting next to you? It's just like that. You have to fill yourself up before you have anything to give. I learned this best when I took a tai chi class and the teacher talked about the movements into the body are gathering energy and the movements away from the body are moving energy out. It's the perfect analogy! If I don't gather energy, I become empty and don't have energy to utilize to do the tasks of caregiving. So when you feel guilty because you want a minute to yourself, STOP. Look at it this way: you aren't being selfish, you are actually just doing one step of the entire caregiving job. A very, very necessary step.

Comment from Michael N: Hi, Amy, love your blog! I would like to know if there are any activities I could with my aunt who has Alzheimer's while I am taking care of her? Something we could do together?

Amy Goyer: Thank you, Michael! So glad you are enjoying my blog! I wrote a two-part blog post about activities to do with loved ones who have Alzheimer's disease.

One of your best tools will be music — find out what music she liked in her teens and 20s and get some CDs or load up your iPod. Listen to music with her and sing along. Another good thing to remember is many folks with Alzheimer's need to stay active — they can't always hold long conversations, but they can DO things with you. Go for a walk, look at old photos, play a game, plant flowers, make cookies … create shared experiences. Hope this helps! Your aunt is lucky to have you!

Comment from Sheila: I am 55 years old, and I am the caregiver for my mom who is 85. I have no siblings, so there is no one to help me out. I cry a lot, and work 10 hours a day at my job, then attend to my mom in the evening. I need a support group. I am neglecting my own health. I am so tired. Please help me.

Amy Goyer: Sheila, I'm so sorry to hear you are having such a rough time! I can totally understand. Honestly, I have gone through times when I cry a lot too! Here is my blog post about one time I had a meltdown in a parking lot! You are overwhelmed with good reason. Caregiving doesn't happen in a vacuum — the rest of our lives go on and we are constantly pulled in many directions.

Here is what I want you to do:

1. Find a support group. Here is the link to the AARP online caregiver support group that you can access any time. Here's another article on finding a caregiver support group you can attend in person. You can also use the Eldercare Locator online to find your local Area Agency on Aging (AAA) for a list of caregiver support groups nearby.

2. Get help. It's time. Look into respite care — someone else who can stay with your Mom at least one evening a week so you can have time to yourself, go to a support group meeting, or just sleep! Here is some info about setting up a respite plan. (Also read my related response to Bob earlier in the chat.)

Remember that even a short walk, a cup of coffee or a quick phone call with a friend can offer a change of focus — even taking a deep breath and stretching is a useful break. Incorporate these throughout your day, at work and at home.

3. Go back to basics. Eat well, exercise and prioritize sleep. I'm convinced that sleep deprivation is the biggest enemy of all caregivers. When I'm exhausted I can't cope as well emotionally or physically with the strains of caring for both of my parents. Of course you're crying a lot! Everything is magnified when you're tired.

4. Know that you will never get everything done. Never. You sound like a very busy, hard-working person who I'm sure is trying to get everything right.

Accept that everything will not get checked off the list, so don't make that your goal. It really is OK. Instead, an important goal is to live in the moment. Find ways to enjoy your mother's company. Laugh together once every day. Incorporate fun. Be spontaneous. It's good for you AND your mother.

5. Keep a list of what you have accomplished and the things that go well and that you feel good about. Sometimes it just helps to remind ourselves that we are doing the best we can do.

Good luck and stay in touch!

Comment from Kristy: I feel so alone in caregiving for my mom. I can't seem to get my family to help me. How can I build a team? I can't do all this by myself!

Amy Goyer: You are like so many caregivers — out here on our own it seems. I've often felt that way too. But in reality, we all have teams — we just don't think of it that way.

Make a list of all the people who interact with your mom, who provide services and support. And make a list of all the people who support you — who listen to you and help you. Include neighbors, friends, doctors, therapists, anyone who cleans the house, hairstylist, massage therapist, manicurist, mail deliverer … Who do you and your mom interact with on a regular basis that add quality to your lives, or who can help out in a pinch? Once I did this I realized I DO have a team. I just manage it differently when it's family members rather than service providers or health care workers. They are all there to support me and my parents though.

So CREATE your caregiving team and you will not be so alone after all.

Comment from Guest: What if sometimes you hate the person you are caregiving for? My mother is 92 and in a nursing home but I am her power of attorney (POA). She is demanding, mean, just not a nice person at all. No matter how much I give, I receive nothing back. Maybe a thank you now and then.

Amy Goyer: Believe it or not, that is a really common question I get. Not all parents and children have fabulous relationships — it's a really tough issue. When those we are caring for are cranky, or downright nasty, the first thing to do is make sure it is not being caused by a health issue. For example, those with Alzheimer's can't often explain that they are in pain and simply exhibit behavior problems. Also, anyone in chronic pain becomes irritable, short-tempered and unhappy over time. But I also always say, as we age, we only get more so ... in other words, who we are becomes magnified. If your Mom was always difficult, she may get more difficult as she ages — this isn't always true but it happens often. So the bottom line is — if that's your Mom's personality, you can't change her. You don't have control of her, and you will just deplete yourself trying to do so. It's a never-ending battle to try to elicit something from someone who can't give it. So the best thing to do is address what you CAN control. If you try to get the reinforcement from your mom, you will constantly feel stressed out, sad, resentful and discouraged. Instead, the reinforcement for what you are doing needs to come internally — from yourself.

Try to feel good that you are caregiving for your mom because you believe it's the right thing to do. Make that your goal — not so much getting a lot back from your mom. Then if you DO get a thank you, it will be the icing on the cake.

Comment from Grace: I want to take care of myself, but I just don't feel like I have time. I'm so busy between work and family ... there just aren't enough hours in the day. Any tips?

Amy Goyer: Grace, I know how you feel! It's constantly juggling and keeping all the balls in the air and there just isn't enough time, right? I've found that if I look at it that way, there really won't be enough time. If I put the "taking care of myself" items at the bottom of my list — after I've taken care of everyone else — they simply won't get done. Ever.

So the first step is prioritizing taking care of yourself. It sounds simple, but it really is an important mental step. You have to believe and embrace that you can't do your job as a caregiver if you don't take care of yourself. In your work, would you not do your report to your boss because you're just too busy? Of course not. You prioritize it because if your boss doesn't know what you're doing you'll be in trouble in the long run. It's the same with caregiving — only you ARE the boss and you MUST prioritize taking care of yourself. Plan ways to do so — and remember they don't all have to be big time drains. Short breaks, a walk, deep breaths, one hour of yoga a week — all these things can help.

Also, schedule ahead — making a doctor appointment for a month from now seems more doable than thinking "I've got to get in there this week!" And go to the AARP Caregiving Resource Center for more ideas about Caring for the Caregiver!

Comment from Stephanie: My son can't find a job so he's moved back in with me. My mom needs more help so I'm thinking of moving her in with me too. I'm really worried about how I'm going to handle this.

Amy Goyer: Stephanie, you are like so many Americans these days — in fact I just published a blog post today about a new report from the Pew Research Center about the sandwich generation. (I call them panini-parents because they are so pressed financially by their grown children!) If your son needs financial help and mom does too, you need to be very careful about your own financial planning — AND taking care of yourself. The Pew study also found almost 40 percent of these sandwich caregivers say their grown kids and their aging parents BOTH rely on them emotionally as well as financially — that's a lot of pressure.

I suggest that you consider your decision carefully and see how your multigenerational household can enhance your situation — take advantage of the benefits but don't let the negatives drain you or your finances. Here are more of my tips for multigenerational living.

Comment from Sharon: I'm wrestling with bringing my mom home from the continuing care facility where she is now living. She has dementia associated with Parkinson's. She's running out of money and before she hits zero, I'm thinking I should take her out of there. With the little she has left, I could pay for help. Once she's gone through her money, it'll all be on me. Thoughts?

Amy Goyer: Sharon, you and Rosemary have a lot in common! Check out my response to her earlier in the chat. I was in a similar situation. I suggest you really weigh the pros and cons, and also do some research — find out what home care options are available in your community.

Go to the Eldercare Locator to find your local Area Agency on Aging and ask if your state has a sliding fee scale for home care services. Some states have Medicaid waivers to provide in-home care if your mom would qualify for Medicaid once her resources are depleted. Look at the short-term AND the long-term effects on you — emotionally, mentally and physically — before you make a decision.

Comment From Joyce: I am a caregiver for my 54-year-old brother who needs 24/7 care due to traumatic brain injury, dementia and alcoholism. It is hard for me to know what to do to help him due to his complex issues. Any suggestions?

Amy Goyer: Joyce, you really have a full plate! I'm sure you feel overwhelmed at times. You are right — it's a complicated situation and requires a complex course of action. You have several options — first, in terms of dementia, contact your local Alzheimer's Association chapter and see about a support group.

Next, since alcoholism is part of the picture, you might consider going to Al-Anon, which is for families of people who are alcoholics. Its website has a locator tool to find an Al-Anon meeting in your community. Remember that alcoholism is a family disease — it affects everyone in the family system, so it will help to address those issues.

Finding support groups with other people dealing with similar issues will help you carve out a plan and help you to continue to adjust it as you go along. Take it one step at a time! And take care of yourself!

AARP: OK, that's it for today, everyone. Thank you, Amy, for all your great advice.

Amy Goyer: I had a great time today — thanks for joining me! Thank you for sharing your personal journeys and allowing me to share mine. Follow me on Twitter @amygoyer, Facebook and my caregiver blog on the AARP website!

Take care!!!